AIDS a disability? Stigma and discrimination of people living with HIV and AIDS in the Russian Federation

AIDS a disability? Stigma and discrimination of people living with HIV and AIDS in the Russian Federation

HIV & AIDS Review 14 (2015) 9–14 Contents lists available at ScienceDirect HIV & AIDS Review journal homepage: www.elsevier.com/locate/hivar Origin...

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HIV & AIDS Review 14 (2015) 9–14

Contents lists available at ScienceDirect

HIV & AIDS Review journal homepage: www.elsevier.com/locate/hivar

Original Research Article

Is HIV/AIDS a disability? Stigma and discrimination of people living with HIV and AIDS in the Russian Federation Marina M. Shilovskaya ∗ National Research University Higher School of Economics, Moscow, Russia

a r t i c l e

i n f o

Article history: Received 12 February 2014 Received in revised form 11 April 2014 Accepted 27 May 2014 Available online 24 July 2014 Keywords: HIV AIDS Disability Stigma Discrimination

a b s t r a c t The article focuses on the rights of HIV positive people in the Russian Federation. Taking into consideration the multilayered definition of disability, the author tries to examine various challenges people living with HIV/AIDS face like stigma within families, social and religious communities, in the workplace and in the health sector. This paper also presents the findings of a qualitative survey on disability and HIV in Russia. © 2014 Polish AIDS Research Society. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.

1. Introduction The total number of HIV-infected Russians registered in the Russian Federation by November 1, 2012 amounted to 703,781 people [1]. Among the population aged 15–49 years, 0.8% live with a diagnosis of HIV infection (preliminary 2012 data) [1]. The majority (64%) are male. Since 2002, there has been an increase in the proportion of females with this diagnosis. By December 31, 2011 in Russia, there were 246,000 HIV positive females (36.0% of all reported cases of HIV infection). In the years 2004–2012 41–43% of new HIV infections were among females [1]. It should be noted that in 2011, females were infected with HIV primarily through heterosexual contact (64.8% of new cases), while men were primarily infected through intravenous drug use (75.3%). Overall, the epidemic of HIV/AIDS has worsened. The incidence of HIV infection and the growth in the rates of new infections remained high; the total number of deaths and the number of HIV-infected people have increased, and the infection actively spread from vulnerable groups to the general population [1]. Human immunodeficiency virus (HIV) is a virus that causes Acquired Immunodeficiency Syndrome (AIDS) [2], a condition in humans in which progressive failure of the immune system allows life-threatening opportunistic infections and cancers to thrive. The

∗ Correspondence to: National Research University Higher School of Economics, 20 Myasnitskaya Ulitsa, Moscow 101000, Russia. E-mail address: [email protected]

increasing availability of anti-retroviral therapy, early detection, scheduled monitoring, and prophylaxis against opportunistic infections have transformed the care of HIV into that of a chronic disease with a lengthened life expectancy as compared to a generation ago [3]. However, due to the progression of the disease or side effects of treatment, some of these people experience temporary, episodic or permanent activity limitations or participation restrictions; in other words, particular opportunistic infections impair the physical, sensory, or mental capacities of HIV positive persons to such an extent that their day-to-day functioning is compromised. For example, Toxoplasmosis of the brain and progressive multifocal leucoencephalopathy, both of which affect only people with HIV, can cause stroke/seizures and affect mobility; peripheral neuropathy, which causes painful tingling in the feet and hands, can also impair movement; dementia can cause loss of movement, motor clumsiness, and even paralysis. 1.1. The legal and medical aspects of disability People living with HIV are not classified as “disabled” in the Russian Federation. The Federal Law “On social protection of disabled people in the Russian Federation” [4] defines disability as a “stable long-term or permanent disability or significant limitation due to chronic illness, injury or medical condition”. Having “disability status” entitles the holder to disability allowance, which varies from about $100 to $240 a month depending on the severity of the impairment. To qualify for “disabled” status an HIV positive person has to be diagnosed with having opportunistic diseases and prove a

http://dx.doi.org/10.1016/j.hivar.2014.05.003 1730-1270/© 2014 Polish AIDS Research Society. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.

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complete or partial loss of ability for self-care. There are no official statistics of how many HIV positive patients in Russia are officially acknowledged as having “disabled” status. Nevertheless, the state recognizes the specific challenges that people living with HIV/AIDS face. Federal Law guarantees HIVinfected citizens all the rights and freedoms (to liberty and autonomy, security of the person, freedom of movement) in accordance with the Constitution. HIV-infected people may not be segregated, isolated or quarantined in prisons, schools, hospitals or elsewhere based on their HIV positive status. People with HIV infection and AIDS have the right to confidentiality and privacy about their health and HIV status. Health care professionals are ethically and legally required to keep all information about clients or patients confidential. Information about a person’s HIV status may not be disclosed to anybody without that person’s fully informed consent [4]. While these rights and freedoms are declared, the rights of PLWHA are commonly violated. 1.2. The social aspects of disability The social model of disability is based on a distinction between the terms “impairment” and “disability.” Impairment is used to refer to the actual attributes (or lack of attributes), or the abnormality of a person, whether in terms of limbs, organs or mechanisms, including those of psychological nature. Disability is used to refer to the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments [5]. In addition to health problems, the main challenges faced by HIV positive people include stigma and misconceptions, disclosure of HIV status to others, risky behaviors regarding prevention of HIV infection, unemployment, depression, lack of social support, and reduced quality of life [6,7]. 2. Methods A qualitative study was conducted from April to November 2013 as part of research on the rights of HIV positive people in Russia. Collection of the data involved the following methodologies: 1) Relevant literature Internet sources were searched for scientific articles on HIV/AIDS as relating to HIV positive individuals with disability and to disabled populations. 2) A questionnaire “Do you consider yourself a disabled person?” on attitudes of the HIV positive to disability was developed and posted on a specialized Internet forum for PLWHA (http://forum.u-hiv.ru). The survey included 19 questions on HIV status, disability status, the limitations and restrictions the respondents’ experience, the forms of support to PLWHA from the government, the knowledge the respondents have about the rights of PLWHA, which rights (if any) are violated, stigma, status disclosure, the general attitude of the Russian society to HIV positive people, the measures to be taken to overcome stigmatizing of PLWHA and to ensure their rights. Demographic information was not collected from the survey respondents. The initial results of the survey and participants’ comments were analyzed. 3) A series of in-depth interviews were conducted (11 HIV positive interviewees) within an HIV positive support community-based organization, situated in Moscow, Russia. Criteria for inclusion in the study included a confirmed HIV positive status and an informed consent to participate in the study. The content validity of the interviewees was established with consultants who have worked in HIV prevention and control. A guide for the

interviews was based on the previous research on HIV and disability and rights of PLWHA. At the beginning of the interview the participants were asked questions from the survey about their general knowledge about disability, stigma and the rights of PLWHA. The initial discussion was followed by questions on personal experience of interviewees: 1. Do you consider yourself disabled? Why or why not? 2. Have you applied for a disability allowance? Why or why not? 3. What social benefits do you expect from the government? Which are of primary importance for you and your family? 4. Do you feel that your rights as an HIV positive person violated? Can you illustrate your position with personal examples? 5. Do you feel stigmatized? Which type of stigma have you experienced? 6. Do you disclose your HIV status freely? Why or why not? 7. How did you feel when you first learned about your diagnose? 8. How can you characterize the society attitude to PLWHA in Russia? 9. What can be done to overcome HIV/AIDS stigma? 10. What can be done to ensure rights of PLWHA? All interviews were conducted in Russian by a trained moderator with experience in qualitative research. Interviews lasted about one-and-a-half to two hours. Ethical clearance was obtained from the Interuniversity Ethics Committee. Written informed consent was obtained from all interview participants after explaining the nature and purpose of the study in detail. 3. Results A total of 31 HIV positive respondents participated in the survey “Do you consider yourself a disabled person?” Only one of those has an official disability status, unconnected to HIV/AIDS. Over a half (59%) respondents have been diagnosed with HIV for more than five years, 6% from three to five years, 24% from one to three years, and 12% for less than a year correspondingly. Although two-thirds of the participants (67%) agree to the statement that HIV positive people have limited abilities, only 40% believe they should be given an official disability status. Most respondents (82%) share the idea that the government must provide support to HIV positive, preferably in the forms of setting up specialized hospitals (20%), free of charge treatment of opportunistic diseases (20%), delay free provision of antiretroviral therapy (18%), regular tests for immune status and viral load (16%), welfare benefits and free of charge sanatorium therapy (both 9%). A significant proportion of participants are fully (45%) or partially (18%) aware of their rights as HIV positive people. Of 76% of those who have read Federal Law “On the Prevention of spreading of the disease caused by the human immunodeficiency virus (HIV) in the Russian Federation” [4], only 27% named it the major source of information about the rights of PLWHA. Just as many (29%) turn to specialized websites and forums in search of relevant information. Less popular sources of information are doctors of infectious disease in specialized clinical centers (18%) and HIV positive support groups (9%). A total of 65% of respondents agree to the fact that the human rights of HIV positive people in the Russian Federation are violated. The respondents blame the government for not providing sufficient social security for HIV positive people. Among the most commonly mentioned are disclosure of medical information (30% of all answers), failure to provide medical help (21%), refusal to

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accept maternity patients in open hospital wards (21%), delays and refusals of HAART provision (15%). While only two-thirds (71%) of respondents were aware of what stigma is, none of them admitted revealing their HIV positive status openly to the community, even if they were asked directly. 21% disclose their diagnosis to partners, close friends and medical workers. Among the reasons for reluctance in HIV status disclosure are fear of public neglect and avoidance, and fear of negative attitudes toward their children (27% each), fear of contempt (23%), fear of dismissal (12%), and fear of pity (8%). Overall, the respondents described Russian society’s attitude toward HIV infected people as aggressive and hostile (30%), rejecting (23%), contemptuous (17%), indifferent (13%), wishing to ignore the problem (13%). Only one person mentioned sympathy, while no one chose “willingness to help”. 4. Discussion The results of the in-depth interviews generally correlate to those of the survey and support it with evidence. The majority of the participants of the research do not directly connect having HIV/AIDS with disability, refusing to be treated as “sick” (“HIV is not a disability”, “My health is good enough not to be disabled”) and claiming that their social status was not influenced by an HIV/AIDS diagnosis (“I feel more like superman than an invalid”). However, in comments within the survey some respondents added that surrounding people, relatives for example, conflate HIV with disability (“I do not consider myself disabled, but relatives and those who knew I am positive, always protect me, do not let me carry heavy things, make me have rest more often, eat enough fruit and vitamins”) or said they would benefit from a disability allowance if it were given (“I do not consider myself disabled. . . but would not mind getting a sort of pension from the state” or “I do not feel, I do not want to feel, and I hope never to feel like an invalid! I would die sooner of feeling helpless than from HIV! But as for free therapy let’s count: I have officially worked since I was 18 years old and now I’m 35, just calculate how much tax I have paid during this time! Therefore, I support a special social allowance for HIV positive people!”) A third of respondents admitted that they acknowledge their disability (“I am the first one here to answer YES. . . To be honest, I do consider myself a disabled person. While I am OK and striving without therapy, my health is in good state. However, I cannot help thinking it all might change one day. Therapy side effects, opportunistic diseases. . . in case I stay in hospital for weeks, months. . . I shall die. . . not because of illness, but hunger. . . I have no one to support me, nothing to sell to pay bills (no car, flat or country house). I wish the state provided me with a certain sum of money to live on before I have one of my lungs removed or I have a few co-infections or I have to spend half a year in hospital. . .”) A disability allowance could support not only recipients themselves, but also their families in case of episodic illness (“I am also very sorry that my husband did not register himself disabled, although he was going to in the fall, and had a right to. He is now in hospital, and I am on parental leave with a little child on my hands. . . living on a miserable allowance for childcare, which is close to nothing! If we had a pension, it would be a little easier . . . and now we could die of starvation.”) A total of 20% of respondents regard themselves partially disabled and not having all the rights and possibilities that ordinary people do (“I am obviously not disabled. . . but I feel defective, flawed . . . I do not know how to express what I want to say, but I hope you understand, flawed, morally and psychologically, my brain will not let me be quiet. Somewhere deep in my mind I feel an inner conflict. As for my everyday possibilities, of course, I am limited, but it worries me less”) One respondent describes his status as having limited “opportunities” rather than limited abilities.

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It is interesting to note that during the interviews more respondents admitted that they felt disabled, but only about one-third would apply for a disability allowance. To greater or lesser degrees, discrimination remains a fact of daily life for people living with HIV in Russia. The issues of disclosure are closely linked to AIDS-related stigma. AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS [8]. The consequences of stigma and discrimination range from being avoided and rejected by family, peers and the wider community, getting poor treatment in health care and education settings, having rights violated, suffering psychological damage, and producing a negative effect on the success of HIV testing and treatment. There are different types of stigma. At the governmental level the legal system of the Russian Federation can prosecute individuals not only for passing the virus on to somebody else, even if they did so without intent, but also for knowingly putting another person at risk of infection [12]. Can these practices slow down the epidemic or do they reinforce the stigma surrounding HIV and AIDS? All respondents agreed to the fact that some sort of punishment for intentional virus transmission is necessary, but pointed out that they constantly feel under the psychological pressure of being prosecuted. One woman complained of feeling “outside of the law”: “In this country if you register as HIV positive at a state medical centre you sign a legal document that you are responsible for HIV transmission and you are aware of all the risks and the punishment you might get”. In the workplace, people living with HIV may suffer gossip, contempt and social isolation from their co-workers and employers, or experience discriminatory practices, such as termination or refusal of employment. Fear of an employer’s reaction can cause a person living with HIV anxiety: “I know they cannot fire me by law, but I cannot get it out of my head. . . the day they find it out, they will force me to resign. Will I survive all the gossip that I might be gay or a drug user? I doubt it. I had better quit myself”. A list of occupations subject to compulsory medical examination includes professional medical workers whose job is connected with dealing with HIV patients or HIV-containing materials. Except those, no one is required to undergo an HIV test at the request of the employer [4]. However, both public and private enterprises systematically violate the Federal Law “On the Prevention of spreading of the disease caused by the human immunodeficiency virus (HIV) in the Russian Federation”. Thus, the illegal requirement of having HIV testing deprives a large number of HIV positive people, who have appropriate education and qualifications, of their constitutional rights on the choice of occupation and profession. For example, by order of the Ministry of Railways of the Russian Federation applicants for positions of train drivers, long distance passenger train conductors, employees serving on refrigerated trains, and restaurant wagons workers are obliged to have a medical examination for HIV infection in advance (at entry) and periodically (1 per year) [9]. Such restriction on the professional activities of people with HIV infection creates a situation when many people who have received this diagnosis will automatically lose their means of subsistence and opportunities to realize themselves in their chosen specialty. Another example of discrimination in the workplace was given during the interview: “I worked as a vendor, and I had to change the medical sanitary record book to get permission to work. I could not get a new one because there is an obligatory HIV test. At McDonald’s, where I was trying to get a job, I was also told that we need an analysis. McDonald’s does not employ HIV-positive people, I know that. Because of this test, I never got a job in my profession as a seller. So I still do not work, we are living with my grandmother on her retirement pension”. In the health sector HIV positive individuals and those perceived to be infected experience stigma and discrimination such as denial of care, receiving HIV testing and disclosing HIV status without

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consent, being refused medicines or access to facilities, gossiping about patient status, verbally harassing patients, avoiding and isolating HIV-positive patients. Health related discrimination practices were most commonly mentioned during the in-depth interviews. Every third respondent complained of HIV status disclosure, 21% reported medical care denial and the refusal to accept childbirth delivery in the general hospital wards. Contradicting the Federal Law “On the basis of health protection in the Russian Federation” [10], mandatory medical testing for HIV is required of all surgery patients, prior to admission to any hospital in the Russian Federation [11]. By law, the patient has the right to refuse testing, but in this case, he or she might be denied medical care by the agency. Often medical institutions do not provide preand post-test counseling and do not report that they are testing for HIV. Interviewees complained of not receiving affordable and credible information about the meaning of the analysis, the importance of treatment in a specialized medical institution to maintain their health and their right to preserve the results of the analysis in secret. This negative experience and the fear of stigma might lead to postponing or rejecting care, seeking care far from home to protect confidentiality, and non-adherence to medication and treatment. Low levels of HAART adherence can lead not only to a decrease in the effectiveness of treatment, but also to the emergence of resistant forms of HIV, where resistance develops quickly to all pharmacological group [2]. This greatly reduces the possibility of the further choice of optimal treatment. Once started, patients are supposed to continue the therapy their whole lives without delays and stoppages. The yearly cost of antiretroviral therapy varies from $3000 to $25000, which, as respondents mentioned during the interviews, makes it not affordable to most HIV patients. The Russian government claims to provide free treatment to all citizens, but for more than five consecutive years in Russia patients have reported faults and delays in the supply of drugs to treat HIV/AIDS [13]. Together with violating the rights for medical treatment, patients are exposed to a high risk of resistance development leading to the virus actively replicating and the disease progressing. Discrimination by health care providers contributes to further stigmatization and compromises their provision of quality care, which is critical for helping patients adhere to medications and maintain their overall health and wellbeing [14]. One HIV positive female interviewee shared her experience of being examined by a gynecologist in a private hospital in Moscow: “I have never experienced such humiliation. For the money, I paid for a consultation and examination, they could have expressed indifference to me, but not the contempt they treated me with. It was as if I was from the lowest caste of humanity. Then, when they were choosing the date of the operation, a nurse said I would be the last patient on that day, as they would have to disinfect everything afterwards. . . I was in shock. . . Does it mean they never disinfected before my coming? In the end, I refused to be operated on here. I am not going to pay money and have to wash off humiliation later or visit a psychologist to restore my psychological state.” Another interviewee, whose husband died of AIDS in a state hospital, complained of failure to provide medical care: “They told me openly it is too late to treat my husband. When he needed some cardiologist help to pump fluid from the lungs, they refused until we paid. In this country it is better not to get sick. . .” As mentioned earlier, HIV status disclosure was ranked the most widespread case of rights violations by 10 out of 11 respondents. Interviewees reported of routinely informing about their HIV status in presence of other people. “I was in a tuberculosis hospital when I learnt about my HIV diagnosis. There were four people in the ward. A nurse asked me to sign papers that I am aware of the legal responsibility, brought pills and started to explain how I should take them. Everybody now knew about my status.”

In addition to improper disclosure of test results, informants commented that health care workers frequently shared patients’ status with each other. A male respondent described: “A year ago I had to have a surgery in the local state hospital. When the surgeon found out about my HIV positive status, he began to postpone the operation until I complained to chief medical officer. I was operated on, but became the surgeon’s enemy. Every nurse in the department learnt about my diagnosis and wore double gloves when approaching me.” Another discriminatory activity is contacting HIV positive patients by health care and social workers at their homes putting them at risk of disclosing the HIV status to family members and neighbors. Interviewees reported getting letters with stamps of infectious hospital departments, receiving calls inviting or even pressuring them to visit the infectious disease doctor. An HIV positive woman who gave birth to a healthy baby shared her experience of such undesired contacts: “When my daughter was 36 months old we had a final testing in the regional HIV/AIDS centre which proved she lacked the virus and was absolutely healthy. In about a year as I was leaving my flat, I found a strange envelope in the door. It had no name, but my address and the stamp of the local infectious hospital. Inside there was a demand for my daughter to attend the medical center and have a HIV testing again. I was furious and frightened at the same time. As I live with parents and an elder daughter who are all unaware of my HIV status, I was put at risk of having to disclose my diagnosis to them. Moreover, this letter was not necessary at all, because I attend the local infectious disease doctor monthly and could have been told about this testing face to face. The most shocking was that there was the same envelope in my neighbor’s door! I now am sure that my neighbors might be HIV positive too and that letter invited their child to have a test. It doesn’t make any difference to me, but who gave them the right to put people at risk of public disclosure? I am convinced that such actions of health care workers, even if they are unintentional, are against law and should be punished.” Overall, stigma and discrimination in the health care setting and elsewhere contribute to keeping people, including health providers, from adopting HIV preventive behaviors and accessing needed care and treatment. Fear of being identified as someone infected with HIV increases the likelihood that people will avoid being tested for HIV, disclosing their HIV status to health care providers and family members, or seeking treatment and care, thus compromising their health and wellbeing [13]. Community level stigma and discrimination toward people living with HIV is found all over the world and Russia is not an exception. The way the community reacts to a person’s HIV positive status can have a huge effect on his or her life. If the reaction is hostile, a person may suffer discrimination and may be forced to leave their home, or change their daily activities such as shopping, socializing or schooling [8]. The opinion that HIV positive people should be isolated is openly expressed in state TV channels [15]. For example, recently a popular talk show “Let’s get married” initiated a wide discussion in the society and online community having invited a HIV positive young man as a prospective bridegroom [16]. After he openly disclosed his status one of the female participants refused to leave her room and enter the studio. She explained to the presenter that HIV is a dangerous disease and HIV positive people should be isolated from “normal” ones, and that such people should never marry and should have relationships only with each other. Her position was accepted and supported by the presenters and warmly welcomed by the audience. The majority of interviewees (92%) agreed on the assumption that such prejudice and misconceptions influence not only people’s reluctance and fear to disclose their status, but also their postponing testing and applying for medical help. Some regions of the Russian Federation, for example the Chechen Republic, passed legislation demanding young people

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willing to get married to take a mandatory HIV testing. The local government intends to slow down the epidemic in this way. A medical authority representative explained that this decision is not aimed at segregation of HIV positive people and the testing results are not disclosed. However, this law violates a person’s right to personal and family privacy, and the society’s attitude to the initiative is dubious [17]. On the community level, religious organizations are influential social networks that have the power to support or stigmatize people living with HIV/AIDS. The majority (76%) of Russians consider themselves Orthodox Christians [18]. The Russian Orthodox Church claims active involvement in the fight against the epidemic of HIV/AIDS and in overcoming its consequences [19]. In 2010 the Church adopted “The concept of the Russian Orthodox Church in the fight against HIV/AIDS and work with people living with HIV/AIDS”, which indicates that “the disease and the associated suffering, including alienation and contempt from others – is the consequence of sin, the neglect of God-commanded moral standards and the interests of the family people” [20]. It also proclaims that people suffering from various diseases, including severe and incurable, are of particular concern to the Church. HIV positive people are welcomed to church and are due all religious sacraments and practices. However, the sexual and moral associations of HIV transmission can also turn the church into a stigmatizing atmosphere for people living with HIV/AIDS. During the interviews one woman reported being excluded from her religious community after she confessed about her status to the priest. Despite the “The concept of the Russian Orthodox Church in the fight against HIV/AIDS and work with people living with HIV/AIDS” not all religious workers are aware of the ways HIV is transmitted and share their stigma among congregation members. Fears of acquiring HIV through casual contact during religious procedures and beliefs that HIV positive people behaved immorally and sinfully contribute to further stigmatization [18]. The belief that HIV/AIDS are a consequence of sin and a prayer can cure HIV [21] may also influence the psychological well-being of PLWHA and challenge adherence to antiretroviral treatment programs. Family stigma strengthens discrimination and community neglect. During the interviews only 14% of respondents admitted disclosing their status to their family members. Common reasons for disclosure are visits and telephone calls of social workers from AIDS centers and the beginning of antiretroviral therapy, when they could not explain the necessity to take so many pills daily. The family reaction differs from exaggerated support and care to complete avoidance, especially at the initial stage. “Everybody turned away from me. . . my old friends have all disappeared. My 18-year-old son who lives in one flat with me, uses separate utensils, cleans the bathroom with bleach and makes me wash his clothes separately, even upper clothes. He often says he dreams I disappeared from the face of the Earth. I pray. . .” HIV/AIDS are perceived as disgraceful diseases in Russia. When asked about their first feelings connected with their new positive HIV status, the majority of respondents named shame and fear. Newly added patients or young HIV positive mothers mention self-stigmatization due to insufficient awareness of the disease. One female respondent reported feeling fear to infect her child thus restricting herself in showing affection, touching or kissing him. What steps can be taken to overcome the stigma of HIV and discrimination in the Russian society? Our respondents recommended providing more information about the disease and ways of transmission in mass media, running educational programs at schools and teaching schoolchildren to have a patient attitude and be tolerant to people living with HIV/AIDS, encouraging people to stop regarding HIV/AIDS a shameful disease or a disease of drug users, sex workers and homosexuals, breaking the association of the

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disease with particular groups of population, including marginalized ones, abolishing the legal liability for unintentional HIV transmission, setting up specialized well-equipped hospitals for HIV positive people and providing equal access to treatment and antiretroviral therapy throughout the country. Toughening the punishment for health care providers in case of public disclosure of the HIV status can contribute to ensuring that the rights of people living with HIV/AIDS are protected. Some limitations to the study should be mentioned. The first one is its small sample size. Second, we have recruited the interviewees at a community-based organization where people with higher education are more likely to attend. Third, all our interviewees were from Moscow, thus we cannot extrapolate our in-depth interviews results to PLWHA from other regions of Russia. Fourth, discrimination and stigmatization were self-reported; hence, some reporting bias of close personal issues in the questionnaire is expected. Our strengths are that we reached saturation in our study as many of the responses were similar among participants of the survey and in-depth interviews and that it is based on insiders’ experience. Further well-designed qualitative and quantitative studies need to be done to the issues of HIV and disability, stigma and discrimination of PLWHA in Russia. 5. Conclusion The problems outlined are complex and numerous. Although HIV/AIDS does not directly lead to a legal disability status in Russia, people living with HIV and AIDS need governmental support and protection. Discrimination remains a fact of daily life for people living with HIV in Russia. Various levels of AIDS-related stigma contribute to the incidence of HIV infection, the growth in the rates of new infections and the infection actively spreading from vulnerable groups to the general population. Eliminating physical, information and communication, economic and attitudinal barriers not only increases access to HIV programs, but also may assist people in accessing broader health and social services. These services are essential to fulfilling the right of persons with HIV to the highest attainable standard of physical and mental health. Conflict of interest None declared. Financial disclosure None declared. Acknowledgements The author would like to thank the survey respondents for their participation. We also thank staff members of the HIV Positive Support Centre which hosted the interviews sessions. Last, they thank the anonymous reviewer whose comments significantly improved this paper. References [1] The Russian Federal Scientific and Methodological Center for AIDS Prevention and Control, The number of HIV-infected people in Russia in 2012 (official data), 2012, Retrieved 22.06.13, http://www.hivrussia.net/stat/2012-3.shtml [2] S.A. Miles, HIV infection and AIDS: new biology, therapeutic advances, and clinical implications. Introduction, J. Acquir. Immune Defic. Syndr. Hum. Retrovirol. 16 (Suppl. 1) (1997) S1–S2, Retrieved 22.06.13, http://www.ncbi. nlm.nih.gov/pubmed/9389309 [3] R.A. Weiss, How does HIV cause AIDS? Science 260 (May (5112)) (1993) 1273–1279, http://dx.doi.org/10.1126/science.8493571, PMID: 8493571.

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